Journey of a typical family trying to adjust to a new life with an ATYPICAL princess

Tuesday, July 9, 2013

The Rub

Anabelle took a few years off our lives yesterday. She had been asleep all day. This is not a totally unusual occurrence, she will occasionally take "sleep days", but usually she can be awakened. When her nurse left at 4:00, she told me she was feeling a little concerned, Anabelle had not woken up when she was moved or fed or catheterized. It was feeling a little reminiscent of when she went into epileptic status last year. So we were watching her closely. When I went to get her into her pajamas for bed at 7:30, she was still unresponsive. And she was cold. Like, unnaturally cold. I took her axillary temperature. 91.6 degrees. That's not right. Went to take a rectal. 93.6 degrees. Well, crap. I quickly wrap her in blankets and a hat and sit with her snuggled in my arms to try to warm her. She stirs a little and lets out a little mew, but falls right back asleep.

Brian and Elyse were having dinner with friends last night, so I call him and tell him what's going on and ask him to stop at the pharmacy to get a new rectal thermometer, as I don't trust these digital things to be accurate. We discuss the need to go to the ER. Do we take her, do we wait? If we take her, we will be there all night, and 99% chance of admitting (they ALWAYS admit her). I had a meeting this morning, and Brian is on a deadline to finish a house by the end of the week. Now, I do not say that callously, as in "Ugh, so do not have time for that, she'll have to suck it up." I say that because this is the ongoing debate of our life: trying to balance Anabelle's needs with the needs of the rest of the family. We have to pay our bills, we have to eat, and to do that, we have to work. So it is always a matter of trying to weigh which need is greater. Can we handle this crisis at home, or is it only something a hospital can do? We decide to wait another half hour and see if we can get her to warm up/wake up.

Eyes may look open, but no one is there

Now, all of this, while scary, is something we have learned to manage from our new life. Weighing the factors, brainstorming the solutions, and, if necessary, dealing with the interruptions to our lives to make everything right again. HOWEVER...there is a wildcard: 5-year-old Elyse.

Elyse came in from dinner excited to show me the early birthday gifts our friends had given her. When she sees Sissy wrapped up and knocked out in my lap though, she stops short. "What's going on?" she asks. "Sissy just isn't feeling too good right now, and she was a little cold," I tell her. "Oh no, poor Sissy," she says and comes over to cuddle her. I tell her to go get her pajamas on, and she comes back down and says, "I'm sleeping down here, too. I'm staying with Sissy." She lays down on the couch and pulls a blanket on. I tell her Sissy isn't sleeping here all night, just for a little bit, and that we'll all go upstairs to read her a story. I haul the blanket-clad Anabelle up to Elyse's room and start reading her a story. Two pages in, Anabelle is drifting off and her oxygen is downstairs. I tell Elyse we're going to have to cut it short tonight so I can get Anabelle back downstairs and she immediately sits up and looks around. "Where are her numbers?" she asks. "Her numbers" is what Elyse calls Anabelle's pulse ox machine. I tell her I left it downstairs, and that's why we have to go. "Okay, Mommy," she says, "I'll turn my lights off." As I'm walking back down, I hear, "Mommy?" "Yes, Elyse?" "I really hope the cold is gone tomorrow."

Shortly after that, Anabelle DID wake up and her temperature came back up. She's still a little off, and we are talking with her doctors to try to come up with a solution, but she is back to stable for now. The thing is, though, that the thought that "this might be it" runs through my head more often than I can say. Last night, it crossed my mind, "Oh my God, her body is shutting down, her organs aren't working, her blood isn't pumping, she's hypothermic." Because this is always a possibility. Her brain could one day decide keeping that growing body running is too big a chore for it to handle. And while this morning I was able to tell Elyse that Sissy was much better, the odds are that one morning, I'm not going to be able to say that. And I have no idea how I am going to help her lose her only sister, her soul mate. In our 30's, with a lot of life behind us, I think my husband and I will at least survive the loss, and be able to compartmentalize it and put it in perspective. But I have absolutely no way of knowing how badly Anabelle's death could F up Elyse's life. And nothing, absolutely NOTHING, scares me more than that. And therein lies The Rub. Both of my daughters' lives and futures are hinged on the life of one. And while that one will be the one to lose her life, the other has so very much more that could be lost in the process.

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Kate Linzey is the President at Linzey Appraisal & Estate Services (www.linzeyappraisals.com) and mommy to a typical 8-year-old and 1-year-old and a very special 3-year-old. You can learn more about Anabelle, her diagnoses and our family on the website of her charitable foundation, Anabelle's Wish: http://anabelleswish.org/, which provides aid to families with children with neurological disorders.